RSD/CRPS - Awareness!

I have Reflex Sympathetic Dystrophy Syndrome also recently known as Chronic Regional Pain Syndrome (RSD/CRPS – inventive I know!) November is the international month of RSD/CRPS awareness.

All over my Facebook and Twitter feeds are wall posts and hash tags emblazoned with the bright orange ribbon - our united symbol. There are quite a few variations of the statement ribbon but you get the general gist – orange symbolises the pain and specifically the burning sensation we all deal with.

If you have a couple of moments please watch this video:

It’s been not so subtly mentioned that I should write a piece on my personal story the campaign – uniting with my fellow RSDer’s.  So here I am!

I have had the condition for close to 20 years now, all starting when my left foot suddenly went completely numb, as I have mild Cerebral Palsy, at first it was thought that my odd symptom was a nerve damage and I was later tested for tumours on my brain and spine – nothing was found.

At the time of my mysterious foot numbing the colour in my leg started to turn a dark purple which would fashion it’s self with red spots and blotches after being in water. To be honest being such a young child I didn’t really worry about the foots lack of enthusiasm and in case of further damage  I was banned from P.E lessons – brilliant!!

Sadly the numb foot became a raging ball of fire which left me screaming with agony – it felt as though someone had lit my foot on fire and that the muscles and tendons where trying to rip themselves in half.

Since that horrible day my life changed; I’ve always since felt let down by my own body. The long list of symptoms include pain in every possible way – burning, pins and needles, a sensation as though I had hot rods coming out of the leg, spasms so bad they’ve deformed my foot into a crescent shape with my toes and crossed over and distorted into yucky little features. This is not to mention the permanent circulation problems, hair loss, swelling of the limb, tremors and many more!

That’s the horrible thing about RSD/CRPS – you never know how you’re going to feel when you wake up.  Yesterday evening I was up until 4:30am in pain, close to fainting and on the verge of being sick, when I woke this morning, I just had a horrible dull ache and pins and needles and tomorrow I might wake up with my foot contorted into odd shapes due to severe spasms and cramps. Not knowing how I’ll feel tomorrow, next week or next year is the only thing that scares me but I’m always optimistic that one day it will go as quickly as it came.

For now I’m really suffering as the condition has moved to my right leg and left arm. It had never occurred to me that I would have a certain amount of pain muted in the left leg due to my Cerebral Palsy (as very simple way of explaining CP is a stroke at birth) and the limited feeling I’ve always had in my left side might have saved me from a lot of discomfort. But now the right leg could/is causing real trouble! Still – I’ll live!

It would be a great help if you could share this piece on your Facebook walls, Twitter feeds and Blogs, there still people who don’t believe the condition including medical professionals – despite the very physical signs and we need the support!

L x

(Twitter name Ladygogo84)

Stop acting gay! WTF!

I think the world went a little mad yesterday! I read these two articles (Sound advice?!? and Charitable?!) and couldn’t believe it! Schools in Essex telling bullied children to “Stop acting Gay” as a form of advice and an American Fast Food chain giving $2million dollars to anti gay campaigns!

What are these people thinking? We worshipping celebrities who are known for..... well what are they known for?? Who send out press releases asking for time and respect in a difficult marriage break up (Ms. Kardashian) – I’ve had longer flu bouts than a lot of these fairytale unions! And yet gay marriages are seen as corrupting our wholesome moral ways - B****ks!!

I have family and friends who are gay, bisexual (who I nickname - just plain greedy! ;) and even asexual, all of them are in long term, committed happy and very loving relationships – not only that ;they’re sweet, intelligent kind people – not sinners or “wrong!” and yet I know straight, miserable, nasty people who I wouldn’t wish anyone to be married to and yet they’re unions would be celebrated and not condemned!

One very dear friend of mine was sent to therapy and another to a summer camp to be cured of their homosexual urges, like it’s a habit, illness or an addiction. After some of the therapists I’ve seen I’m almost sure that the people offering these services are more messed up that any of their patients!

Can you tell I’m angry?

L x

Benalmadena Part Four – and final!

Thursday in Spain was beautifully chilled and spent doing what we had become accustomed to; sun bathing, swimming and keeping hydrated with Sangria... see I told you there was a theme!

Friday was my favourite day of the holiday! Through the Sunset Beaches excursion team we had all booked a trip to Gibraltar. Still part of our “British Empire” Gibraltar was beautiful but to be honest I knew nothing about the place... so much so when we booked the trip; Mike and I decided to go Dolphin Safari, whilst the rest of the family decided to explore “The Rock” and I asked “Which rock?”... I surprise myself sometimes!

THE Rock!

Anyway, we had an hour and a half coach trip to the town – I was a sleep for most of that!  The week overall was catching up on me, this all might not sound a lot but I generally spend my days, doing a few little bits and resting in between, nights out and holidays take me days or weeks to recover from!

When we arrived in Gibraltar, Mike and I were taken straight to the harbour; we had half an hour to kill so we went boat shopping..... just choosing our yacht for when we win in the lottery, and before I get any messages, yes we do play it!

Once we got on the catamaran I was parked at the back of the boat, and had no intention of walking around the rocky vessel. Within minutes of leaving the harbour we were being followed by a small pod of common dolphins, these were tiny to what I expected only 1-3metres in length but they were mesmerising never the less! As the engines were fired up and we moved faster through the sea, the dolphins were leaping in the waves behind us! They were almost impossible to photograph, although Mike took the money shot! I did a lot of filming instead.

Mike's money shot!

During the excursion we were told about Billy the Bottle Nose. Usually this breed and common dolphins do not get on, with the bottle noses actively bullying their smaller counter parts. In 2006 the Dolphin Safari team noticed a young Billy swimming with the common guys and it seems they have adopted him and/or he’s a bit confused and thinks he’s one of them!

Half way through our hour long trip, Billy made an appearance, at 3-4 metres in size he wasn't hard to spot amongst the others. As mentioned I was parked up at the back and Billy seemed to be at the front on the opposite side of the boat. I didn't think I’d get to see him close up, then one of the crew next to me pointed and Billy was swimming towards where I was, not only did he come right next to me he stopped pulled his head sideways and looked right at me. I was recording a video as that point and you can hear me in the background – “Woooow....oh my God! oh my God! oh my God!”  - it made my holiday!!

After the boat trip we had some lunch and wandered around the harbour and shops before it was time to head back to our hotel.

On our last evening we decided to cook any of our left over’s and order in pizza from the onsite takeaway. Again we congregated on Mike’s parents’ balcony and listened to A Neil Diamond tribute act, who was actually very good (you would have been impressed Karen!).

Spain is a beautiful country, the people are enthusiastic and helpful (and by the way love children – our waiters couldn’t get enough of my baby Niece Beth), the weather was wonderful (although compared to OZ did nothing for my RSD/CRPS), I wouldn’t recommend going unless you have a powerful motored chair or a strong family member to get you around, but having the latter I had a brilliant time and will one day return and go back to see Billy!

L x